Dexter Lilly looks like a typical, happy, curious toddler. And he is, but for a rare condition known as Neurofibromatosis (NF).
NF is a rare genetic disorder that causes tumours to grow on nerves throughout the body. It is NOT cancer. The tumours that grow are typically benign, but in some cases they can turn malignant.
In NF, tumours can develop just underneath the skin’s surface and cause visible external growths, or they can grow deep within the body and affect major organs. NF can lead to a range of complications including deafness, blindness, paralysis, physical deformities, bone abnormalities, learning disabilities and chronic pain. Occurring in 1 in 3000 births (approx 2 million worldwide), there is no cure and no treatment options.
The diagnosis was shocking and heartbreaking for all of us who know and love Dexter. His parents - Rebecca and Luke however, carry the heaviest burden - seeing specialist after specialist, searching for answers, hoping for a cure.
Rebecca was forced to quit her job in order to ensure Dexter receives the medical attention he needs, as well as to try and bring some stability to the family at a time when everything seems so out-of-balance.
The costs of Dexter's care continue to mount. Supporting a family of four on a teachers salary is difficult. Private health insurance does cover some of the costs and while we're hopeful Bec and Luke will recieve some government support in the future, that is not the case currently. The emotional burden is hard enough, the out-of-pocket costs are an added strain.
So many of us who know and love Dexter, Harry, Bec and Luke - and even those who don't know them but are touched by their story - want desperately to help. There are two ways we can:
1. We can spread awareness of NF. Share facebook posts, links to Dexter's Tales blog
, talk to your family and friends about NF. In this way we hope to bring NF into a more public forum, increase research funding, and one day find a cure.
2. Donate. $5. $50. $500. Whatever you can manage. Every little bit helps. We could never truly express our gratitude for your generosity - thank you!
For more information about their journey with NF, see Bec & Luke's blog: Dexter's Tales